Karen Martin

Until you have been diagnosed with something like this, it is hard to understand the denial a person feels. In the beginning I kept telling myself that if things got too bad I would just step in front of a bus rather than deal with it. Sounds stupid, I know, but facing our own mortality is just very difficult to do. Think about that. What…[Read more]

Jason, I am sorry to hear you have a family member who is dealing with this. I think you have probably hit it right when you ask if this is a form of denial. When you say she says it is not bad enough yet, that is a big clue. It might also be a question of cost. You don’t mention her age or her relationship to you. You also don’t say what meds…[Read more]

In regards to respectfully questioning our doctors, I found a way to do that when my husband was dealing with multiple health issues. You know how it goes: You wait for the appointment to come around and then you wait in the waiting room and then the exam room. They finally come in and are ready to whiz back out in about two minutes flat. I…[Read more]

Mark, I was glad to read that you have gotten better results with a few tweaks to your healthy diet plan. We need you around here, fella, so you take good care of yourself! 🙂

I have been taking Esbriet for a year now and also have loss of appetite and food aversion. I was one of those people who could eat the same thing for each meal day after day and be happy but that has changed. I am using Boost/high protein to supplement a few days a week. Like you, Wendy, sweets are probably never going to be an aversion for…[Read more]

Hey, Bobbie. Sounds as if things are pretty intense right now. I hope you get the answers and help you are needing very soon. Love and prayers the procedure goes smoothly and that you don’t have to be sent to another hospital for it to be done. Hang in there.
Karen

Hi, Susan. Glad that maybe I was of help to you. This forum is wonderful for making new contacts and getting new ideas. Take care and stay safe on those evening walks.

Mark, thanks for posting this link. I have known for a long time that I probably have relatively long pauses between many of my breaths. In fact, tracking my breathing patterns makes me anxious! It was suggested to me that visualization might be a better tactic for me. It was only during a yoga class that I found I could comfortably track my…[Read more]

Hey, Bobbie,

The doctors and hospitals I have been to also have email as part of their communications possibilities. I know it sounds counter-intuitive to go that route, but it might actually be quicker. I think that sometimes a doctor might have his nurse or PA send a quick response this way. Perhaps you could at least find out how long the…[Read more]

Hey, Bobbi! Welcome!! Mark is right about people here being well informed and happy to share and help out. I know you have come to the right place!

Thanks Mark and Charlene. I will be eagerly awaiting the info you provide. This is a great forum and there is such diversity that I always am eager to read what is new. Thanks for all the hard work you do on our behalf!

I think doing a post about preparedness for power outages would be great. I don’t think a lot of us give it much thought until we find ourselves in that position the first time. Even then, we don’t necessarily give it enough thought. Since I am a list-maker at heart, having something concrete to work from would be a big help to me. I can tell…[Read more]

Thanks, Char. I read your friend’s post about power outages and found it very helpful. I have two daughters who also live in town who are not always affected at the same time as I am, but if this happens in weather when I can’t get out, I need a plan for certain! Time to start getting my head and my things together. This forum is absolutely…[Read more]

I was happy to see John bring up power outages. We had a brief one here yesterday. Lasted only about an hour due to a tree falling on a power line. It has made me think about a generator since I am on oxygen 24-7. Does anyone out there have any experience with this? I am alone and almost 70 years old, so I think there is a lot to learn about this.

Just yesterday the governor of my state, Virginia, was asked how he would respond to people who claim the virus is a hoax and we don’t need to wear masks or practice social distancing. I thought the response he gave was wonderful. He said, “I would suggest that they talk to someone who has had the virus or lost a family member to the virus.…[Read more]

Mark, I am glad you posted this. I remember well the pain I felt in the early days after my husband died and it did literally feel as if my heart were breaking inside my chest. I would have sworn it was truly a physical pain. Now I realize it might have been. Luckily for me it wasn’t and that was over four years ago, but I am sure we don’t…[Read more]

I have been taking Esbriet for eight months and dealt with some side effects in the early days. They have dwindled a lot now, other than the loss of appetite, which can be a pain since it is to be taken with food. I was never told there would come a time when I couldn’t take it unless my liver became a problem or I was to be given a transplant,…[Read more]

My diagnosis, like Jill T’s, was sort of accidental too. Although I had talked to my doctor about some shortness of breath on exertion, we felt it was due to all the usual suspects:age, weight and allergies. It did respond somewhat to allergy medications, so I really can’t blame the doctor. However, a few months later I had a strange recurring…[Read more]